THE FOUNDATION FIGHTING BLINDNESS INC

EIN: 237135845 501(c)(3) Medical Research

COLUMBIA, MD

Total Revenue
$36,615,169
Total Expenses
$49,532,382
Total Assets
$110,885,645
Net Assets
$83,868,834
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Financial Trends

Organization Details

Formation Year
1971
Legal Domicile
MD
Principal Officer
JASON D MENZO
Phone
4104230600
Tax Period
2024-07-01 to 2025-06-30

THE FOUNDATION FIGHTING BLINDNESS INC, founded in 1971, is a mid-sized nonprofit in the Medical Research sector that reported $36.6M in total revenue in fiscal year 2024. Expenses of $49.5M exceeded revenue, resulting in a 35% operating deficit.

Mission

TO DRIVE THE RESEARCH THAT WILL PROVIDE PREVENTIONS, TREATMENTS AND CURES, FOR PEOPLE AFFECTED BY RETINITIS PIGMENTOSA, MACULAR DEGENERATION, USHER SYNDROME, AND THE SPECTRUM OF RETINAL DEGENERATIVE DISEASES.

Program Service Accomplishments

Program 1
Expenses: $32,043,327 Revenue: $2,004,208

RESEARCH: THE FOUNDATION FIGHTING BLINDNESS, INC. (THE FOUNDATION) FUNDED RESEARCHERS ARE ACHIEVING REMARKABLE SUCCESS IN DISCOVERING, TESTING, AND DELIVERING TO PATIENTS A WIDE RANGE OF PROMISING...

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RESEARCH: THE FOUNDATION FIGHTING BLINDNESS, INC. (THE FOUNDATION) FUNDED RESEARCHERS ARE ACHIEVING REMARKABLE SUCCESS IN DISCOVERING, TESTING, AND DELIVERING TO PATIENTS A WIDE RANGE OF PROMISING THERAPIES TO PREVENT, STOP THE PROGRESSION OF, AND CURE BLINDING DISEASES DUE TO RETINAL DEGENERATIVE DISEASES. THE FOUNDATION HAS ENCUMBRANCES OF OVER $36 MILLION, NOT INCLUDED ON OUR JUNE 30 FINANCIAL REPORT, FOR ACTIVE RESEARCH PROJECTS THAT HAVE FUTURE RESEARCH MILESTONES. OUR SCIENCE COMMITTEE'S SPENDING PLAN INCLUDES SPENDING AT AN AVERAGE OF $28 MILLION ANNUALLY TO SUPPORT FUTURE RESEARCH. AS OF THE END OF OUR FISCAL YEAR 2025, THE FOUNDATION'S RESEARCH GRANTS PROGRAM IS FUNDING 104 GRANTS BEING CONDUCTED BY MORE THAN 133 INVESTIGATORS AT 92 INSTITUTIONS, EYE HOSPITALS, AND UNIVERSITIES IN THE U.S. AND AROUND THE WORLD. A SAMPLING OF THE RESEARCH PROJECTS FUNDED ARE LISTED BELOW: "DEFINING THE UNDERLYING CAUSES OF RETINAL DEGENERATION IN CRB1 DISEASE." JEREMY KAY, DUKE UNIVERSITY DR. KAY AND HIS TEAM HYPOTHESIZE THAT LOSS OF CELL-CELL CONNECTIONS IN THE OUTER RETINA UNDERLIES RP-LIKE ASPECTS OF CRB1-ASSOCIATED DISEASE, WHILE LOSS OF JUNCTIONS BETWEEN EMBRYONIC PROGENITORS UNDERLIES LCA-LIKE ASPECTS. DR. KAY'S TEAM WILL USE MULTIPLE MODELS TO IDENTIFY PRIMARY SITE(S) OF DAMAGE CAUSED BY CRB1 DYSFUNCTION, AND EXPLORE STRATEGIES TO FIX THE DAMAGE. THEY WILL ALSO WORK TO DETERMINE WHETHER THESE CELLULAR FEATURES CAN BE IMAGED IN ANIMALS AND IN PATIENTS AND BE USED AS AN ENDPOINT IN FUTURE CLINICAL TRIALS. "DEVELOPMENT OF A NEW GENE THERAPY FOR AUTOSOMAL DOMINANT RETINITIS PIGMENTOSA" DENISE MONTELL, UNIVERSITY OF CALIFORNIA, SANTA BARBARA DR. MONTELL IS PIONEERING A GENE THERAPY APPROACH TO COMBAT RETINITIS PIGMENTOSA (RP), SPECIFICALLY THE AUTOSOMAL DOMINANT FORM CAUSED BY MISFOLDED RHODOPSIN PROTEIN. BY PROMOTING THE DEGRADATION OF MISFOLDED RHODOPSIN, THROUGH OVEREXPRESSION OF THE ZIP7 GENE, DR. MONTELL AIMS TO SLOW RETINAL DEGENERATION. ADDITIONALLY, OVEREXPRESSING THE ZIP7 GENEA ZINC TRANSPORTER PROTEINMAY RELIEVE CELLULAR STRESS AND PREVENT PHOTORECEPTOR CELL DEATH IN VARIOUS MODELS OF AUTOSOMAL DOMINANT RP. "CHARACTERIZATION AND MITIGATION OF AAV-INDUCED OCULAR INFLAMMATION" WILLIAM BELTRAN, UNIVERSITY OF PENNSYLVANIA DR. BELTRAN AND HIS TEAM ARE WORKING TO IMPROVE THE SAFETY OF GENE THERAPIES THAT USE VIRAL VECTORS TO DELIVER THE THERAPEUTIC GENE TO RETINAL CELLS. AS MORE IRD GENE THERAPIES MOVE FROM THE PRECLINICAL STAGE IN ANIMAL MODELS TO CLINICAL TRIALS, THERE IS AN INCREASING RECOGNITION OF THE NEED TO BETTER UNDERSTAND GENE THERAPY-ASSOCIATED UVEITIS (INFLAMMATION). THIS INFLAMMATORY RESPONSE CAN IMPEDE THE THERAPY'S PERFORMANCE AND CAN CAUSE RETINAL DAMAGE.

Program 2
Expenses: $3,681,241

PUBLIC HEALTH EDUCATION: DURING FY25, THE FOUNDATION CONTINUED TO PROVIDE EDUCATION AND SUPPORT TO PEOPLE AFFECTED BY RETINAL DEGENERATIVE DISEASES. THE FOUNDATION ALSO FIELDS A TEAM OF PROFESSIONALS...

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PUBLIC HEALTH EDUCATION: DURING FY25, THE FOUNDATION CONTINUED TO PROVIDE EDUCATION AND SUPPORT TO PEOPLE AFFECTED BY RETINAL DEGENERATIVE DISEASES. THE FOUNDATION ALSO FIELDS A TEAM OF PROFESSIONALS FOCUSED ON EDUCATING OPHTHALMOLOGISTS AND OPTOMETRISTS ON THE LATEST ADVANCEMENTS WITH THE FOUNDATION'S RESOURCES AND RESEARCH ON THE INHERITED RETINAL DISEASE SPACE. TO KEEP OUR CONSTITUENTS AND PROFESSIONALS INFORMED, THE FOUNDATION PUBLISHES EXTENSIVE CONTENT VIA THE WEBSITE AND SOCIAL MEDIA/EMAIL CHANNELS; DISTRIBUTES A NEWSLETTER ONLINE AND IN PRINT; PRODUCES AND SHARES EDUCATIONAL PODCASTS WITH LEADING EXPERTS IN THE SPACE; HOSTS VIRTUAL AND IN-PERSON EDUCATIONAL AND NETWORKING SEMINARS; AND HOLDS QUARTERLY INSIGHTS FORUM CALLS TO INFORM THE COMMUNITY ABOUT SCIENTIFIC PROGRESS. THE CONTENT INCLUDES THE LATEST DEVELOPMENTS IN RESEARCH AND CLINICAL TRIALS, AS WELL AS PERSONAL STORIES FROM MEMBERS OF OUR COMMUNITY. ADDITIONALLY, THE FOUNDATION HOSTS REGIONAL FORUM PRESENTATIONS THAT PROVIDE TIMELY CONTENT TO EYE CARE PROFESSIONALS. CHAPTERS BRING THE FOUNDATION'S MESSAGE AND MISSION TO LIFE. IN FY25, THE FOUNDATION SUPPORTED OVER 47 VOLUNTEER-LED CHAPTERS IN 23 STATES IN THE US AND ONE CHAPTER IN LONDON, UK. OUR CHAPTERS HOST VISION CONNECTION, AN ENRICHING AND SUPPORTIVE GATHERING FOR THE BLIND AND LOW-VISION COMMUNITY. EACH SESSION COVERS EDUCATIONAL PRESENTATIONS, COMMUNITY ENGAGEMENT, FUNDRAISING, AND INTERACTIVE Q&A SESSIONS.

Program 3
Expenses: $1,641,058

MY RETINA TRACKER REGISTRY: THE FOUNDATION MAINTAINS A RESEARCH DATABASE OF PEOPLE AND FAMILIES AFFECTED BY RARE INHERITED RETINAL DEGENERATIVE DISEASES. THE REGISTRY IS DESIGNED TO SHARE...

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MY RETINA TRACKER REGISTRY: THE FOUNDATION MAINTAINS A RESEARCH DATABASE OF PEOPLE AND FAMILIES AFFECTED BY RARE INHERITED RETINAL DEGENERATIVE DISEASES. THE REGISTRY IS DESIGNED TO SHARE DE-IDENTIFIED INFORMATION ABOUT PEOPLE WITH AN INHERITED RETINAL DISEASE WITHIN THE IRD RESEARCH AND CLINICAL COMMUNITIES TO HELP ACCELERATE THE DISCOVERY OF TREATMENTS AND CURES. DURING FISCAL YEAR 2025, APPROXIMATELY 8,000 ADDITIONAL MEMBERS WERE ADDED TO THE REGISTRY, BRINGING THE TOTAL NUMBER OF REGISTERED INDIVIDUALS TO APPROXIMATELY 43,000.

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Trantor Score

Financial Health Score (300–850) · Liquidity · Solvency · Sustainability · Efficiency

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Liquidity (40%) • Solvency (30%) • Sustainability (20%) • Efficiency (10%)

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Financial Overview (2024)

Revenue Breakdown

Contributions & Grants $31,063,702
Program Service Revenue $2,004,208
Investment Income $2,544,692
Other Revenue $1,002,567
TOTAL REVENUE $36,615,169

Expense Breakdown

Grants Paid $22,880,201
Salaries & Benefits $11,708,364
Fundraising Expenses $9,011,999
Program Expenses $37,365,626
Other Expenses $14,211,512
TOTAL EXPENSES $49,532,382

Year-over-Year Comparison

2024 2023 Change
Revenue $36,615,169 $35,702,558 +0.0%
Expenses $49,532,382 $48,226,411 +0.0%
Net Income $-12,917,213 $-12,523,853 +0.0%
Key Indicators
Grants to Organizations Grants to Individuals Lobbying Political Activity Foreign Activities Donor Advised Fund Schedule B Required
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Governance

Voting Members
25
Independent Members
24
Employees
96
Volunteers
2500

Governance Policies

Conflict of Interest Policy
Whistleblower Policy
Document Retention Policy

Special Practices & Reported Activities

Operated a School
Operated a Hospital
Provided First Class Travel
Reported Conflict of Interest
Reported Asset Diversion
Excess Benefit Transaction
Made Political Expenditures
Engaged in Lobbying
Operated Donor Advised Fund
Maintained Art Collections
Filed Form 720

Compensation of Officers, Directors & Key Employees

Total Officers
13
$1,572,956
Total Directors
25
$12,500
Key Employees
5
$2,051,282
Highest Compensated
5
reported
Name Title Hours/Week Role Reportable Comp Other Comp Total
ADRIENNE GRAVES PHD DIRECTOR 1.00
Director
$0 $0 $12,500
KAREN PETROU BOARD CHAIR 10.00
Officer Director
$0 $0 $0
JASON MORRIS EXECUTIVE VICE CHAIR 1.00
Officer Director
$0 $0 $0
HAYNES LEA BOARD SECRETARY 1.00
Officer Director
$0 $0 $0
STEVEN ALPER CHAIR, DEVELOPMENT 1.00
Officer Director
$0 $0 $0
JEFFREY FREED CHAIR, AUDIT & RISK 1.00
Officer Director
$0 $0 $0
DAVID NIXON CHAIR, FINANCE & INVESTMENT; TREAS. 1.00
Officer Director
$0 $0 $0
JONATHAN STEINBERG MD CHAIR, SCIENCE 1.00
Officer Director
$0 $0 $0
MARYROSE SYLVESTER CHAIR, AT LARGE 1.00
Officer Director
$0 $0 $0
WARREN THALER CHAIR, NOMINATING & GOVERNANCE 1.00
Officer Director
$0 $0 $0
GORDON GUND DIRECTOR - CHAIRMAN EMERITUS 1.00
Officer Director
$0 $0 $0
DAVID BRINT DIRECTOR 1.00
Director
$0 $0 $0
SCOTT BURT DIRECTOR 1.00
Director
$0 $0 $0
DARREN DEVOUE DIRECTOR 1.00
Director
$0 $0 $0
LAURA FIETTA DIRECTOR 1.00
Director
$0 $0 $0
ROBERT HEIDENBERG DIRECTOR 1.00
Director
$0 $0 $0
SUBER HUANG MD DIRECTOR 1.00
Director
$0 $0 $0
MARSHA LINK PHD DIRECTOR 1.00
Director
$0 $0 $0
LAURA MANFRE DIRECTOR 1.00
Director
$0 $0 $0
BRADFORD MANNING DIRECTOR 1.00
Director
$0 $0 $0
JANINE MARKS NIXON DIRECTOR 1.00
Director
$0 $0 $0
EVAN MITTMAN DIRECTOR 1.00
Director
$0 $0 $0
GEORGE PEINADO DIRECTOR 1.00
Director
$0 $0 $0
MARTHA STEELE DIRECTOR 1.00
Director
$0 $0 $0
JOSHUA STEINBERG DIRECTOR 1.00
Director
$0 $0 $0
JASON D MENZO CEO 32.00
Officer
$504,560 $93,231 $723,931
PETER L GINSBERG COO 32.00
Officer
$364,025 $85,311 $540,342
AMY M PALMER LASTER CHIEF SCIENTIFIC OFFICER 40.00
Officer
$281,622 $27,061 $308,683
RUSSELL W KELLEY MANAGING DIRECTOR, RD FUND 0.00
Key Emp
$0 $85,994 $533,294
TODD A DURHAM SVP CLINICAL & OUTCOMES RESEARCH 40.00
Key Emp
$324,179 $80,261 $404,440
JEFFREY D KLAAS CHIEF OF STRATEGY AND INNOVATION 40.00
Key Emp
$344,934 $33,516 $378,450
RICHELE DONAT CHIEF HUMAN RESOURCES OFFICER 40.00
Key Emp
$324,700 $45,263 $369,963
JUDY TAYLOR SVP/CHIEF DEVELOPMENT OFFICER 40.00
Key Emp
$290,836 $74,299 $365,135
CHRISTOPHER S ADAMS VP, COMMUNICATIONS & MARKETING 40.00
Highest
$237,414 $64,234 $301,648
MICHELE DIVINCENZO VP, SCIENTIFIC & ED. CONFERENCES 40.00
Highest
$239,787 $60,971 $300,758
JEFFRY COLLINS VP, DATABASE SYSTEMS & TECHNOLOGY 40.00
Highest
$234,136 $53,880 $288,016
ANNA WAGNER VP, FINANCE 40.00
Highest
$239,697 $22,111 $261,808
CHAD R JACKSON - SR DIR PRE-CLINICAL TRANSITIONAL PROG. 40.00
Highest
$207,565 $17,439 $225,004
CLAIRE M GELFMAN FORMER CSO (THRU 6/24) 40.00
$341,844 $31,176 $373,020
Note: Compensation data is self-reported by the organization on their Form 990. "Reportable Comp" includes salary, bonuses, and other reportable compensation from the organization and related organizations. "Other Comp" includes benefits, deferred compensation, and non-taxable benefits.

Historical Data

Year Revenue Expenses Assets Net Income
2025 $36,615,169 $49,532,382 $110,885,645 $-12,917,213
2024 $35,702,558 $48,226,411 $124,009,134 $-12,523,853
2023 $30,437,892 $51,265,440 $130,891,355 $-20,827,548
2022 $42,887,836 $49,175,609 $145,877,854 $-6,287,773
2021 $29,791,479 $40,728,225 $155,616,058 $-10,936,746
2020 $35,372,887 $41,134,475 $159,573,247 $-5,761,588
2019 $53,369,210 $33,924,028 $166,093,298 $19,445,182
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